Hooooo doggies. Something all us Autoimmune-challenged Hepatitis C sufferers have bemoaned is our inability to get into the Sofosbuvir GS-7977 trials. The date of our salvation is nearer. Here’s the link. A warm thank you to Patty Beigel for posting that on my facepage.
For what feels like aeons to those of us who are stage 4 and have autoimmune hepatitis on top of the big C, we have awaited the “official” release of the Sofosbuvir/ Daclatasvir/ family of nucleotide analogue inhibitors. See http://en.wikipedia.org/wiki/Sofosbuvir. People with autoimmune-compromised systems suffer a body out of control-attacking it’s own organs. Add Interferon to this already overheated mix and its like an airstrike with Napalm on a fully engulfed house fire. Once excited, it is also like Pandora out of her box-free to roam about the body causing mischief. And, like Pandora, the body’s now-emboldened immune system defenses suddenly feel no urge to slow down and return to a more quiescent state.
An equal number of failed responders of several bouts with the bug juice are just now coming to hear of this new wonder drug. The feeling of deliverance from what was guaranteed to be an ugly descent into hell before must be indescribable.
Gilead Sciences, the company behind the drug, has been trying to obtain advance release due to the almost 96% cure rate with few or no side effects. Contrast this with the pegylated Interferon, ribavirin and Telaprevir cocktail (VERTEX, Victrelis, etc.) that leaves you blind, with DM2 and thyroid cancer and an 85% cure rate. Kind of a no brainer why we’re overjoyed. All we have to do is look around us at the Interferon casualties to thank our lucky stars we were forced to wait a while longer. I do not gloat. I tried the bug juice one time because my vaunted hepatologist didn’t notice my Antinuclear Antibody numbers were 1:160. That was the Napalm moment. April 14th, 2007. The fire still hasn’t subsided. This was why none of us were allowed in the GS-7977 study. Had we failed to clear the virus and stay infected (or be unable to stay on due to an allergic reaction), we would have pulled the success rate down from its current 96%. I get that. I want the drug as much as the next person but I will await my place on the lifeboat politely without a lot of fuss. The biological imperative to stay alive is so strong that you will do anything to attain it- even having to wait another year.
Absent a family history of a panoply of diseases involving the digestive tract, and if significantly exposed to some horrible pesticide for a period of time, a lot of my fellow Vietnam Veterans seem to have an inordinately higher level of autoimmune disorders. VA is as baffled as we are as to what could possibly be responsible for bending DNA that grotesquely. They promised to look into it but now are bowing out gracefully in 2016 because “there’s simply nothing there that merits scientific study or shows any correlation between dioxins and autoimmune disorders other than the ones the Secretary has already conceded”.
“Procedure: Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee. Written submissions may be made to the contact person on or before October 9, 2013.”
To those who can’t take IFN, why not send in a brief letter or email in support of immediate availability. Everyone is being too patient with this. AIDS patients got the FDA to act fast because they “acted up” and created bad publicity.
Time is of the essence.
Contact person: Karen Abraham-Burrell, Food and Drug Administration
Am hoping that my place in line is not bumped due to others being more sick than I, which I understand, but the wait has been 15 years for some words of encouragement in place of the gloom and doom.